Mucinous Carcinoma of the breast
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For sure Voraciousreader the more people who need it, that find it, especially when they are from all over the world, the more useful the site becomes, so I am so glad you keep it fuelled up with information and encouragement. It has certainly been extremely helpful to me and I took a while to become aware of it and be helped with all that it offers.
Blessings and prayers to and for you all. Tricianne
TricianneAust Diagnosis: 10/20/2010, DCIS Pure Mucinous Cancer , 2cm, Stage I, Grade 1, 0/3 nodes, ER+75% /PR+ 75%, HER2-. Lumpectomy,Tamoxifen,25 x radiation, Vit D deficiency being treated. Feeling fantastically normal & healthy
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Hi ladies, just wanted to share and hopefully get a bit of support. I've just recieved the results of my MRI and my right breast shows the cyst that we have been monitoring for the last two years as a benign progressive enhancement compatitable with glandular tissue (nothing too serious there) but there is another lesion beneath this. It's measuring at 6mm and described as a "circumscribed nodule" stating that it has a benign appearance but has washout charactaristics. They are recommending an ultrasound with a biopsy to confirm what it may be but I just feel like that rollercoaster has come speeding by and swept me straight back up again. I know that it could end up being nothing but I won't know for maybe two weeks when I see the BS again unless the radioligist fills me in as he goes and I get the pathology report from my GP before hand. I'm just scared that they may recommend a mastectomy on that side too now. I know the worrying never stops but I just feel so low at the moment and I don't know how I'm going to go through this procedure again on my other breast. Oh and I'm still no clearer on the whole tamoxifen thing...I asked the BS some questions and he couldn't answer them and he's referred me back to the Onc who I didn't feel helped me a great deal the last time. I think that it's def time to seek other opinions but I don't want to piss anyone off and cause an issue with any further treatment. The questions he couldn't answer were things that I have learned about here such as if you don't have side effects does that mean that it's not working, the metabilizing screening is something else that he wasn't sure if we are able to test for here and he hadn't heard of Fareston or Toremifene and didn't think that they were drugs that we use here in Aust. He also couldn't tell me if the MC was pure or mixed because it didn't say either way on the path report but he is looking into it for me and will let me know in two weeks.
Feeling very confused and a little unsure if everything is being fully researched and that my best interest is being met.
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Unsure... I am sorry to hear that you haven't reached your new normal yet. Regarding your MRI and the need for the biopsy, I think in light of your past with being diagnosed, I think the doctors are being prudent. Regarding waiting another two weeks to know whether or not your original diagnosis is pure or mixed seems cruel. I think a simple call to the pathologist is in order. Awhile ago, a sister in England had a difficult time nailing down which kind she had. After a protracted amount of WEEKS, she was told when it is "mixed" then it is written "mixed" on the report. When it was "pure" then it just was written"mucinous.". Seems pretty bizarre that there isn't a standard way of writing the report. Nonetheless, a simple call should do the trick... Or an Email!!?? For goodness sake, this is the 21st century now, isn't it??!!!
Regarding endocrine therapy, you do need to find a medical oncologist to discuss with you what your absolute risk of recurrence is if you take it. Remember it is also helpful at prevention in your other breast. Don't worry about being annoying. The doctors work for YOU! If you are not getting your questions answered, find another MO.
Thoughts and prayers to you.0 -
Unsure... One more thing... I am going to be bold here and please don't feel hurt when I say this... Would you consider changing your user name? "Unsure"--- we are all unsure! Every day we are all unsure about whether or not we chose the right treatment. Why be reminded? Perhaps a more proactive name??? How about "IamBold.". You are not any more unsure than the rest of us! You have a right to be pissed and a right to be angry. Channel your feelings and thoughts in a positive way.
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Hi vocarious reader, thanks for the advise, the doctor did say that if it wasn't mentioned on the report then it more than likely isn't mixed but that he would follow it up.
As for my user name, I'm sorry if it's a reminder for everyone and I didn't mean to upset anyone. I started out on these posts back in Feb.when I was told that I would need a NSM but that they didn't believe that it was cancer. I'd had a core biopsy and mammo and US didn't show anything not even the DCIS so my whole world changed in an instant which I know all of you can totally understand. I was so confused and freaking out that I was taking such an extreme measure when they didn't believe it to be cancer and with a 1 - 3% chance I wasn't sure that it was the right decision (obviously it was the best choice that I have made so far) and I hadn't told family or close friends at that point because I didn't want to upset anyone before I knew what I was going to do. My husband and an acquaintance and my GP were the only ones that I could talk to about this so when I found this site that was the first thing that I could think of to use as it was exactly how I was at the time. After being on this site and coming to realise the difficulties and issues everyone is dealing with and now having you bring it to my attention, I will certainly change my user name but it never crossed my mind that it would impact on anyone.
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It doesn't bother me! I thought it would bother you. Why be unsure about anything? First you were unsure if you had bc. Now you are unsure again AND you are unsure about treatment. Oy! Too much unsure! You don't have to change your name but I just think you should have some name with personality!
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Wow...how am I not meant to feel hurt by those comments? I thought the whole idea of this site is to get advise and some knowledge on what has worked for others and how they feel. That to me sounds like I'm just annoying to you. I have been really strong and "getting on" with my life and everyone around me thinks that "it's all over and done now" but because of the MRI I came back on here to make sure I had enough info for when I spoke to the BS again but I didn't realise that it would make you annoyed that I am so "unsure" of what steps I should take and that my user name would need "personality" in order for me to fit in here. I also thought that others that are going through the same things would be more understanding not trying to belittle how someone else is feeling and making them feel that their fears are insignificant. Your words, maybe, are meant to lift me but it really doesn't feel that way they have really cut deep. I don't have other uncertainties in my life just this massive one that is something that I didn't think that I would have to deal with at my age. This just makes me feel that I can't turn to this site for advise or for venting as so many others say they can only do here because everyone just gets it here...
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I am so sorry. I do not mean to hurt you! You have gone through so much and continue to go through so much!! You are doing all the right things!!! Please don't feel hurt. Everyone comes here feeling unsure about so many things. I just thought that having a user name that gave you strength would help you during this difficult time.
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SaraAust, you are feeling very vulnerable with all you are dealing with, its true that all of the unsurities undermine our confidence but thats where we are at with the stage you are going through. There are so many uncertanities.There are so many pros and cons for each treatment its often very hard to weigh them up and come up with a decision that we feel confident about. I know that I have wavered at each stage of treatment and that indecision in itself seems to be an important part of the process.Its also very frustrating when we ask supposedly top notch experts what seems to be straight forward questions and they don't have answers ready. Please feel that you can continue to use this site to vent your problems and fears and that we will respect your feelings. I do appreciate your capacity to be straightforward about the way you felt unsafe on here so that it can get unravelled and know that it was not intended. My prayers are busy for you all for support, encouragement and healing.Blessings Tricianne
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Names are funny things. On the internet we have freedom to choose our own labels, and our self-perception and needs may change as the situation develops. Voracious reader, yours seems a very apt handle, as your approach seems always seems to be, Let's hunt down the latest research and get some hard facts. I have seen some very aggressive screen names in other places that have put me off relating to those people. I'm fine with Unsure, can actually really relate to how you described it Sara, but also I like how TriciaAnneAust and SaraAust are aust-sisters now, we do get a new and often more supportive family than those from the real world when we come and share here. We could start a whole new thread about How I chose my username! Certainly we can't all be Cathy, and tags like Hope4thirty or BadBoobAllGone do have a certain ring... I almost signed up as A-RIght-Tit ...
which is all I have left, I mean it's all I have now after surgery... having got the cancer worries off my chest... but who knew two years ago that would be it, actually BigFatArmy might be more apt if I had to choose now, as the lymphoedema is much more life-changing at a day-to-day level than the original cancer! Although it won't be if I get a recurrence. 
I haven't heard that anyone is offended by "hymil" unless there's a language somewhere in which it means smelly garden-rubbish ??Sorry for derailing the thread a bit. Thank-you for all the support and sharing here.
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Hello, I've recently had a lumpectomy for what turned out to be 5cm, Stage 2b, Grade 1, 0/1 node, ER+/PR+,HER2-, mucinous IDC. I am 51 and my Oncotype DX is 19. 5cm was a surprize as imaging tests were showing 2.5-3cm. Both BS and oncologist seem overwhelmed by the size and want me to start chemo ASAP. Suggested protocol is 6 Adriamycin & Cytoxan cycles. I am wondering if this scheme is going to be effective for mucinous type of cancer. My concern is that my oncologist may not have an experience with mucinous type and are not taking it into consideration. I do think that at 5cm I have to go through chemo but would like to find out the best drug combination for this type of cells. Any input if possible will be highly appreciated.
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I'm not an expert on chemo, was told I probably didn't need it, but want to say, Welcome, ovbru! Sounds like you have your situation more or less under control, hope you continue to do well. Keep us posted!
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Hi Ovbru, my momhas been diagnosed with IDC, mucinous type, 5 cm tumor, stage 3b,she is going through chimo right now, her current treatment is Pharmorubicin 150 mg (epiribucin in the US), cyclophosphamide 1200 mg, 5 Flouracil 150 mg. I don`t know it you recognize the name of the medicine, but though to write them anyway. We don`t have any tests available in Romania to tell if this current treatment will help with this type of IDC...we are hoping to make the tumor smaller befor the operation, so she will have 4 cycles of 3 days each.All doctors we have asked here say that with a tumor 5 cm or bigger she will definetly need chimo. Good luck to you and I will be praying for you.
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Hi again, I am busy reading all your updates and praying specifically for you all. I haven't had to have chemo due to the tumour being only 2cm so I can't chime in with any helpful knowledge on this score. But I can keep you all in my thoughts and prayers each time I log in.It still amazes me how many countries this thread reaches, I am so glad that I am computer, sort of, literate or I would be missing out on all of this info and support.
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I came across this forum the other day after getting my pathology report from my mastectomy. Here is my history in short form:
35 years old at dx. First sign of problem 4/14/11 - sore breast (like when you stop nursing). 4/21/11 - mammo, ultrasound, MRI & biopsy. 4/26/11 - dx with bc stage IIIa - large tumor 10cm, swollen nodes. 4/27/11 - CT and bone scan. The original plan was chemo, bilateral mastectomy w/ beginning reconstruction, radiation, complete reconstruction, plus Herceptin for a year and tamoxcin for 5. 5/10/11 - started chemo. The tumor was too large to do surgery first so I began 6 rounds of chemo (TCH) every 3 wks. I only made it through 4 rounds until it took a toll on me and I had to have a blood transfusion. 8/9/11 - they decided to give me a "break" and sent me for a mastectomy in my down time. 8/15/11 - right side mastectomy (have to wait on additional surgery since completing chemo sometime 4/12).
Forgot to mention that I did genetic testing and to everyone's surprise (based upon my age) I am negative for BRAC1/2.
The pathology report shows that my BC is mucinous carcinoma mixed with DCIS 25%.
I go back to the BS on 9/6 and will get my script for a prosthesis and bras. Does anyone have any input? Right now I just have the lovely camisole with pillow breast that you make to size to try to make the same as your remaining breast (which is difficult considering it provides no support for your natural breast). I will return to work on Monday, but wanted to get a heads up on if anyone has not had immediate reconstruction.
I have 2 small children - boys 2 and 5 - which I credit for my ability to maintain a positive attitude through all of this. I don't have the time to sit down and cry or be miserable after working all day and then coming home to spend time with them. I wouldn't want to spend time with me if I were crying and miserable. My husband has tried his best to understand all of the medical tests and jargon, but most importantly, he says just tell me when you need me take to you any appointments. It was quite a shock to find out I had such a large tumor in my breast and to have started chemo less than a month after I first felt something odd.
The chemo had a great response with my tumor - at the time of mastectomy it had decreased in size from 10 cm to two smaller tumors between 1.5 and 2 cm. The effectiveness of the chemo may have been the result of my tumor being mixed DCIS.
When I initially went for mammogram they only noted some calcification - no mass. Ultrasound showed small mass, but was hard to see since I have dense breasts (normal for younger women which is why they do not recommend mammograms earlier). This small mass did not correspond with what could be felt deep under the breast tissue, so BS also ordered MRI. She did not want to wait on the MRI to biospy so she used ultrasound to do core biospy. It was one long day I was at hospital from 9 am to 5 pm and I knew from the pace of them doing all the tests immediately not to expect good news when I came back the following week.
Thank you for allowing me to share my story.
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Hi everyone! I am back with some more info we got back from thr biposy. ER pozitive 70%; PGR pozitive 10%-15%. Cerb B2 intense and continued membrane reaction in >10% but <30% in tumor cells (++) Ki67 pozitive-10-15% in tumor cells.
Is it a good thimg to be ER pozitive? Please help me understand this. My mom is one week away from her 2nd round of chimo and is feeli ng very tired but otherwise seems ok.
Thanks
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Welcome i2willsurvive (What a positive name
) Thanks for sharing your story and I hope you will find the right help and support here. The strong response to chemo is encouraging even thought you still needed mastectomy. I am someone who hasn't gone for reconstruction and I don't intend to, definitely, although I do think I will get the scar prettied up one day. I'd say to be a bit gentle with yourself, no matter how strong you are this is a very stressful experience, try and take a little time to be kind to yourself!Buburuzaa, the advantage of being ER positive is that there are specific drugs to help reduce the oestrogen levels around the body, or block it from feeding into the tumour; which will therefore reduce the risks of recurrence, but not everybody gets on well with those drugs.They include tamoxifen, arimidex, aromasine and femara tablets and faslodex monthly injections. Reducing oestrogen in this way puts you straight into an artificial menopause if you had not yet got there, which can be pretty hard to handle. Although your mum is probably older than that. People who are not ER+ could be given those drugs, but they would not benefit in the same way. Also most breast tumours, i think over 70% of them, are ER+ so it's the standard that doctors are used to treating. I can't comment on the rest of the diagnosis but I'm sure someone else will be able to explain the other details. I'm very happy that she is doing well with the chemo, it is normal to be tired and it's not surprising, given all she has been through.
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I2willsurvive, thanks for sharing your story its always a privilege to read the journey others have been through. I will add you to the list of MC sisters that I pray for each time I get onto my trusty computer. I don't have any info personally on reconstruction I was very small busted before hand so the op didn't make a massive difference. Its great to hear that chemo had reduced the size of your tumours. You certainly are young to have breast cancer and not be BRAC1/2, although we seem to be hearing of more younger women on this website. It certainly is a long day at the hospital when one test leads on to the next one, and to the next. All I could do in the same situation was be glad all the tests were available, it hasn't always been possible to do them as soon as the first ones are positive.( though like my little niece said to me how can positive be so negative!) I will pray for your husband and the support he is giving you and for your two sons.
Buburuzza, being ER positive is positively good,as hymil says it makes it possible to cut off the estrogen supply that feeds the tumour. As your mum is more around my age she may find the side effects of medication a nuisance to start with but by 3 - 4 mths the body seems to have balanced itself out. Tiredness is so normal but anything your mum can do to develop a bit of energy is worth it. I found going for short brisk walks actually gave me energy. Blessings on you all.
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Hymil and TricianneAust thank you so much!!! Thank you for you words, you don`t know how much it means to me, us...My thoughts and prayers go out to both of you!
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Hi i2willsurvive, your diagnosis of mixed mucinous carcinoma is similar to mine. Glad to know your chemo works. I did not have chance to do chemo before mastactomy. I am triple positive too. There is a thread about triple positive and you will find a lot information there as well. Best wishes to everyone!0
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Had appt w/ onco yesterday to go over pathology report. When he saw that the tumors that were removed were mucinous carcinoma he said that I must have had another type of breast cancer also (which is not unusual) since mucinous does not respond to chemo. What the other invasive cancer was I am not sure, but it was no longer present in the tissue removed during the mastectomy. Onco overall was very pleased with results.
I still have to finish the 2 chemo tx I did not get in previously. I go Thurs for 5/6, but doc did say if it is as hard on me this time I will skip last one. Also I am considering ovary removal vs taking tamoxifen. I already had a hysterectomy and my right ovary removed 2 years ago due to unexplained pain that could not be resolved. So I only have my left ovary at this point. Onco said this is an option that I can consider.
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So glad the oncologist was pleased about it. (((hugs)))) for a good recovery now.
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I2willsurvive, so sorry about your diagnosis.
Only 5 to 10% of breast cancer are BRAC1/BRAC2 linked why do doctors always say they are surprised that many patients do not have the mutations?
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I don't think its specific to mucinous BC. I think they expect that only BRCA 1&2 patients will present under 50, so if you present at 25, 35 or 45 but have no family linking, they don't know why you got here. (Well it's not by choice, buddy.)
Certainly a lot of the general literature about BC goes like this: Risk factors: Female, Over 50, or have family history, HRT user, obese, drinks too much, not enough exercise.... (no, i'm not feeling guilty, not ticking any boxes yet...) . Oh, of course, it's because I waited till 30 to have my baby. Silly me.
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Hi, I've just been diagnosed with 1.5 lesion of infiltrating mammary carcinoma, pure mucinous type. This diagnosis has gobsmacked me! I have been struggling with multiple sclerosis for the past 15 years and interstitial cyctitis for the past 5 years. Before that I had fulmanating ulcerative colitis with toxic megacolon when I was 24, and my entire colon, rectum and anus were removed and I've lived with an ileostomy since then, 36 years ago. I've always had dense 'lumpy' breasts and dutifully got my semi- and annual mammograms. The lump that turned out to be cancer had been there for the past 4-5 yrs and the doctors always said it was not something to worry about. What finally made them (and me!) worried is that this time I had more calcifications and they were in a linear pattern. The diagnosis still dosen't seem real-my MS has been progressing the past few years and I was just getting myself back to my "MS normal" and then POW!!! this happens. I'm just tired of being ill and fighting MS and IC every day and now this. I don't know if I can deal with any more. I'm so angry that I have to go through with more coping and greiving and doctor's appointments and surgery and just all of the crappy stuff that goes with a new, serious illness. I've been focused on MS for so long that a path report that says I have cancer dosen't seem real, and somehow, I'm not even scared of the cancer, I just don't want to do this again!!!!
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Hi Beatup,
You are not alone! We're all here for you to vent and cry and laugh, whatever you need. I too was devastated by my diagnosis, but I think with mucinous carcinoma, we got the best of the worst. I can't even imagine the kind of health issues you have had to endure. This is my first serious illness and I'm praying it will be my last. My thoughts and prayers are with you!
Vikki
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Welcome Beatup, and I'm sorry you have to join us. It seems like you have been through so much already without adding cancer to the mix. You must be so sick of hospitals! I'm horrified that the doctors have known about that lump for several years and done nothing and now it's invasive, that sucks. Hope you find the information and support here that you need, special space to rant and to make friends too.
I think she must be on holiday at the moment but there's a poster here, Voracious Reader, who knows stacks about mucinous cancer and understands all the research, so do come back with any specifics as you find out more your diagnosis and treatment plan.
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Welcome to our ranks Beatup, we hope that our site can be helpful to you as it has been to us. It is exceptionally hard when you get one health setback after another and you can't imagine that it is ever going to get any better.We do feel for what you are expeiencing. Living with an ileostomy since you were 36yrs old is no easy matter after all that colitis etc.I have only had a colostomy for 10 years following bowel cancer then last year I got mucinous breast cancer but I must say all the treatment etc has been much better than I prepared myself for, so that is my prayer for you that soon you will pick up and that life turns a better corner for you.You will find the MC sisters a very supportive caring bunch, they have been a great source of inspiration to me since I found this site. So many blessings and know you are added to my daily prayer list for improved health outcomes for you. Many blessings Patricia PS Hi to everyone else. Voracious Reader are you back from hols yet???
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The cure for the sudden-onset ulcerative colitis was surgery - Bingo it's cured! I didn't deal with being sick with colitis for years, it was more like a matter of months. I found dealing with an ileostomy no big deal. Multiple sclerosis, though, is a whole different animal. With MS, I slowly, over the course of 20-some years, went from a ,healthy, very-active woman with a wonderfully challenging job as an RN to a "early retirement due to illness" shell of a person gradually unable to do anything but shuffle with a cane and take whopping amounts of meds to manage my disease. I absolutely hate it! Interstitial cystitis is a very painful disease and I've had to add more meds to try to manage that, plus change my diet from a very healthy diet to one restricted to only a few bland, boring foods. Over 20 years I've blasted my immune system with increasingly powerful drugs in an effort to slow down the MS. Right now, breast cancer seems like more of a pain-in-the butt than a disease I'm going to have to deal with the rest of my life like the others. I plan to have a double mastectomy to "cure" the disease. I hope. I hope I finally have good luck for a change and don't have to go through radiation and chemo. I don't think I could do that.
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Hello brave women, I have just had my surgery and wanted to give an update: I am still in pain but trying to focus on silver lining (time off work). I was so happy to fond put I have no lymph node involvement and clear margins. Next step is radiation in Oct. I had reconstruction at the same time; basically a reduction to both sides (I was a dd). Plastic surgeon seems very unconcerned about aesthetics as he expects rt breast to change after radiation so I am trying to not worry too. For me the best part of all this has been realizing how kind and helpful people are, including you all!
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